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Young sisters battle cystic fibrosis

From the outside in, the Hall family seems like any other in Omaha. Alexa, 7, loves to show off her cartwheels. Noah, 5, goes from sitting quietly watching a show, to hamming it up for a camera. Presley, 17-months, makes everyone smile with her animal noises.

The Halls deal an invisible challenge every day, something most families do not; two of them have cystic fibrosis. Alexa is one of them.

Cystic fibrosis causes thick mucus to build up in Alexa’s lungs and digestive tract. The disease causes chronic lung infections and digestion problems. Approximately 30,000 people in the United States have CF, and the current median age of survival is 37 years old.

Alexa had chronic sinus issues as a baby, serious enough she required surgery. Her parents, Steve and Wendy Hall, got the diagnosis when Alexa was 6.

“Because of how her sinuses looked at that time, they recommended she had a sweat test, which is what diagnoses CF,” said Wendy. “It came back positive.”

Neither Steve nor Wendy knew of any family history of cystic fibrosis, an inherent disease. Steve found out later one of his cousins is a carrier.

The Halls immediately got their younger son, Noah, tested as well. His test was negative, but Wendy was also 7-months pregnant with the couple’s third child.

“Three months after Alexa's diagnosis, Presley was born and she was diagnosed with CF the following day,” said Wendy. Presley had surgery at just two weeks old and spent another two months in the NICU to recover and gain weight.

More than a year later, the Hall family has a set routine to help Alexa and Presley stay as healthy as possible. Twice a day, every day, both girls strap on vests and undergo 20-minute treatments to shake loose the mucus clogging their lungs. Alexa also takes 15-20 pills a day; Presley takes 30.

“You have to take lots of medicine and you have to do a vest,” explained Alexa. “The vest feels like bumpy on you.”

The girls and their parents have to be constantly vigilant of germs and illness.

“Every time [Alexa] gets a cold or a bug, it turns into a sinus infection,” said Steve Hall. “She has to go on an antibiotic and it's probably every couple of months we have to do that.”

Still, the Halls consider themselves fortunate.

“The median age of survival 20-years ago was elementary school,” said Steve. “So they've really come a long way with drugs and treatments for CF. There are drugs in the pipeline right now that are in phase 2, phase 3 clinical trials that are specific for our girls and we're very excited because the preliminary results are astounding.”

But to get there, families like the Halls need research and donations to pay for it. They will take part in the Great Strides Walk May 4 for the Nebraska Chapter of the Cystic Fibrosis Foundation. In 2012, their team, “Hall’n for CF”, raised more than $19,000.

“They’re trying to find a cure for cystic fibrosis,” explained Alexa. “Then you wouldn’t feel so sick when you get the cold or something.”

90-percent of all money raised through the walk goes directly to the foundation. It will take place Saturday, May 4 at Aksarben Village-Stinson Park in Omaha. Registration begins at 9:30 a.m., followed by the walk at 10:30 a.m.

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